Calm Amongst the Chaos

Monday morning I woke up to Andi in our bed, I asked her “did you pee” “yup” she replied. Ugh knowing that I now had to wash her sheets, the same sheet I just had washed the day before because Elmer the Guinea Pig pooped on them. Then I hear Oli whining a groggy whine, go into his room and the stench hits me first, “what the hell happened?” I lovingly ask and then I see vomit ALL OVER like all over. Rug, bed, crib, wall… like ALL OVER. Double to the ugh. More laundry. I mean my poor baby is sick. Plus I had to go to work that day. Text my niece who I was going to be dropping all 3 off at the movies with to say it was just Lily and Andi Jane and take Oli to work with me. He was fine all day. Nothing seemed to be wrong with him. Fluke I guess, until he woke up at 5am the next day with a fever. Ugh. I had to work again so I had to beg my niece, please say it’s ok to watch him, she of course so kindly said it was ok. And Wednesday I was so looking forward to my day off and having a swim play date at a friend’s yet that morning I went into his room I found him with poo leaked all over his sheets and still a fever. Ugh. And his butt is still leaky today, Thursday, leaving us another fun day home all day long. Did I mention the heat wave? It’s supposed to hit 119 on Saturday. So I guess we don’t have many options anyway regarding getting out.
Andrew took Andi Jane today to go to Greer. I work on Friday’s so I will head up after 3pm tomorrow. Pending no leaky butts. Lily has me nervous, I gave her milk of magnesia yesterday to help her, which helps some, but nothing miraculous, yet today she had a diaper full and that makes me think the leaky butt is heading her way. She is not someone you want to have a leaky butt so I am praying that MOM worked, but honestly pretty much know that is not the case. A 4 hour drive is not safe with a leaky butt. If it isn’t changed quickly rash sets in. Sigh. This is all my fault I said on Saturday “my kids have been so healthy lately” what an idiot.
Lily has only 2 appointments left to bump up her VNS and it will be at the highest setting the nurse practitioner can put it too. We’d then go see her Neuro, but he is in Oklahoma, AND the guy who was set to take Lily on is moving to Colorado. Good times. It appears Barrow’s pediatric neuro dept is going away. I am taking this as a get out of jail free card. We now have every right to move on over to Phoenix Children’s which I actually like better, I just pray the guy who we were told to get in with is good. I know Lily sees a lot of Dr’s but Lily NEEDS a pediatric neurologist epileptologist. Not too specific. But when you have a kid with seizures like Lily’s, especially a dx of lennox gastaut syndrome following her CDKL5 dx, you NEED an epileptologist.
BUT I do have good news. Lily has been doing great with the VNS! Her big seizures are typically less than one a week, more like every 8-9 days. She still has clusters of myoclonics and drops, but she has made it through her therapies with out any type of seizure. She can go hours with none. This is a huge accomplishment. Although she had one Sunday and then again on Wednesday, I am afraid she has leaky butt coming on which would make sense why she would have more seizure activity. She seems pretty quiet today so I am just sure it is coming. All and all though she is doing well. She is happier sans seizures, she is doing better in therapy and we are thrilled to see her doing so well. It seems like it has been a long time since we have seen her like this. And we are happy.
Looking forward to getting out of this ridiculous weather. I rarely complain about this weather. I am a true Arizona girl who would rather a couple hot as hell months and the rest of the year amazing, I even have a rule, if you praise the weather in the winter you are not allowed to curse it in the summer BUT 119? C’mon. Curses.